2014 A Year of Hope: Days 52-59

Our little miracle ringing in the New Year!

 Happy new year! With 2013 over and 2014 starting anew our family has a lot to be grateful for.  2013 was one of the most scary and amazing years of my life.  We found out we were pregnant and experienced the ultimate bliss that comes with knowing that you are going to be bringing a new person into this world.  But our bliss was short-lived due to the shock of finding out that my water had broken at 22 weeks.  Those moments in the hospital before Benton was born were some of the most unnerving moments of my life.  Hoping and waiting for your baby to stay inside you all the while knowing that death could be lurking around the corner.  Once the shock of his early birth wore off we were simultaneously elated to have our baby here with us alive, but at the same time terrified he would fall on the wrong side of the dreaded statistics.  As 2013 wore on we fell into our pattern of hospital visits, reading Benton stories and creating a community with the other NICU moms.  With the support of everyone around us we have made it through harrowing times where we weren't sure that Benton would survive to see another day, but on December 31st Joe and I rang in the new year at the NICU with our favorite little man.  And just like that 2014 began with us staring at our baby who was opening his eyes to greet the new year.

Looking back at the past 8 weeks brings me nothing but awe.  Awe that Benton has come so far and beaten so many odds.  Awe that this experience has brought our family so much closer together and awe that becoming a mother truly is the most unbelievable experience anyone can ever have in their lifetime.  For everything that has happened all I can say is that I am unbelievably grateful to have Benton in my life and I hope that 2014 will be the year that my lovely boy exceeds all expectations and comes home.

My wonderful little man clutching my thumb.

Now that you have heard my sweet opining on the advent of 2014 I will give you an update on Benton.  Check out his 7 week and 8 week birthday signs



Over the past week Benton has made slow progress forward after a rough start.  This past Monday I went to the hospital to find out that he had a fever and the start of yet another infection.  My first thought was "wow this kid cannot catch a break" this sentiment was echoed by the attending doctor who came over and said she was troubled by this turn of events because it had seemed Benton was finally turning a corner.  Alas Benton had other plans.  With the new fever the doctors wanted to give Benton a spinal tap, take a urine culture directly from his bladder and take a blood culture.  As the doctors were pressuring me to give consent for the spinal tap Benton starting desating and had to go back up to 100% oxygen.  With him desating so much I was concerned he wouldn't make it through the procedure so I kept stalling until the doctors finally called off the spinal tap and urine culture.

The doctors proscribed him a broad range of antibiotics including the same one that wreaked havoc on his kidneys the first time, but they needed to be sure they were catching everything and they promised to take him off that specific antibiotic the second they had a negative culture.  In addition they increased the pressure on his vent from 34 to 37 and the rate of his breaths per minute  from 40 to 60.  These changes would help him breathe better even though he was on 100% oxygen.  Almost immediately his blood gases got better and his oxygen requirements started to come down.

Benton in his Christmas hat!

After the "exciting" start to the week the rest of this week has been relatively calm.  Benton has been able to require less oxygen and needs anywhere from 60-90% and he has been doing much better during his cares.  For awhile when he was really sick he would desat to 60 anytime you touched him because he was so hypersensitive but now he can tolerate his diaper being changed and getting moved around with almost no desating at all.

The only other major change has been that now that he has yet another infection his edema is back in full force.  While the edema had never really gone away it had started to recede and he had been able to get down to 1100 grams (about 2lb  7oz). But with the new infection his body has sprung another capillary leak and he has been leaking fluids into his tissues again.  Over the past few days we have watched his weight creep up seemingly overnight to 1530 grams (3lbs 6 oz).  That is a gain of 400 grams in just a few short days!!  Keep in mind that this weight gain now puts him over 3 1/3 pounds when he should only be 2 lbs!  That is a lot of water!  Our poor little baby definitely looks like a little Buddha baby but luckily this time he is still peeing so we are hoping he can mobilize the fluid soon and get it off.

Our little Buddha baby.

It's been nice to have a few days to just enjoy Benton without the constant fear of him desating to the 50s.  With his oxygen levels staying pretty consistent around 70-80% I have been able to breathe a bit more and begin to hope for better days.

Please keep praying for Benton's lungs to get stronger, for his pulmonary hypertension and edema to go away, and for his heart to not be strained from all the hard work it has had to do over the past few weeks.

Kangaroo Care